A Bit Lost

Today I woke up early after retiring early (with a throbbing headache from crying), and got dressed and tried to decide if I would drive up to the Hospice House or not. I did have some errands to run in town, so before I left, I stopped over to consult with Dad, and he had already decided to stay home today, and due to appointments, he will stay home tomorrow, too. He had called the facility at eight in the morning, but Mom was still sleeping, but the staff was reassuring and promised to let Mom know he had called and that he loves her.

It was then that I decided I was too emotionally drained to be of much use, and because it is a long drive, and I'll need to spread my visits out, I, too, will stay home today. Dad did just check in with me to let me know he did speak briefly with Mom, and she sounded okay. She was very sleepy, but she did hear his voice. Then the staff told Dad that she did complain of neck pain and pain in her sides last night. They also reported that they gave her a bath this morning and washed her hair.

I continue to feel weepy and sad, yet I also admit there is a sense that it is out of my hands, at this point, but the hands she are in now are better than what Dad and I could be providing, we both admit. I just can't help feeling worried that she may feel abandoned by us.. but I hope to remedy that by calling her in a couple of hours, and hopefully, I'll be able to speak with her for a minute. And perhaps it's worse for me than it is for her right now.

Dad and I both feel a bit lost at the moment. When I went next door earlier, I was okay until I saw the living room and all of the residuals from our recent "battles;" the pillows strewn about, the blankets a tossed every which way atop the couches, the footstools askew. The books and magazines piled around, half-read in desperate ploys to appease and distract her from her woe and angst. The vase of wilted daffodils Chris brought on Sunday. Seeing it all, and hearing how quite their house was, brought a fresh swell of tears. The indent in the cushions of the couch, nearly still warm from the many hours her body has lain there. It was a bit much for me, and I decided it was best to leave and tidy it up on another day.

So, I am home now and mucking about best I can, like a child reaching around in the dark with out the routine of keeping eyes and ears out for Mom. For now, she is safe and cared for, and Dad and I have the room to breath a little and work on some of our own problems.

But the thought of Mom is always there. It is still too early to speculate, but we will continue to hope that the plan carries through and the team at the House can stabilize Mom so that caring for her again, back home, will be a little bit less overwhelming. We will just have to wait and see.

Friday

Yesterday, Mom was pretty groggy in the morning. But she ate a decent sized breakfast and lunch. We had a visit from Jackie the home health aid, who gave her a quick sponge bath and pampering. During lunch, we had a delivery of a portable commode, which we have placed over their toilet. She's seemed to learn how to use the handrails, though she's not totally happy about it.

Just as I was about to leave for a break at home at two in the afternoon, I saw their friend Nancy drive up. We had forgotten she had arranged for a short afternoon visit. I had promised Mom that she had the rest of the day free... oops. Nancy stayed for about an hour, and later Dad told me that after a little "chatting" with Nancy, Mom got tired and began to moan, so Nancy left.

Mom's sundowners wasn't too too bad while I was there, until about four-thirty. Dad emailed me this morning and reported that she slept fairly well last night, after one false start at bed time. He found the remains of a pill in a little drinking glass this morning, assuming it might have been part of a Haldol.

The extra Haldol dosage seems to be keeping her a little less confused.. She seems to have a sense about what is going on, to an extent. She's heard the word "hospice" enough times. She's been very dependent on me lately.

Dad is being very patient and gentle with her. Tomorrow he has church then a concert from two until a little after three. Chris has volunteered to come at noon and stay with Mom until Dad gets home, probably around four. I hope it goes well.. I missed my gig last Sunday, so I hope to get to it this Sunday. However, if need be, I can skip it again.

I'm having trouble getting my worries out of my head at sleep time. Dreams, imagery. Worries and concerns. Mulling over what else I can possibly to do to make this transition more comfortable for Mom and Dad, and prepare for the inevitable. Not that anybody knows when that is.

Bittersweet Acceptance

Yesterday, the evaluating nurse from the long-term hospice section of the agency that has been working with us came at ten-thirty in the morning. Dad and I were able to speak with her for about thirty minutes while Maria kept Mom occupied with her weekly bathing ritual, then Mom came out and the new nurse, Corinne, met Mom and checked her vitals and asked her questions. Eventually, Mom got agitated, so I walked her around a bit, then offered to help her into her bed. After a few minutes, Mom moaned again, so I helped her up and back into the living room. She really hates it when we talk about her, around her, but we had no choice. Corinne kept it short though, and promising to call later, she left within the hour.

I read to Mom for another half an hour or so while Dad ran down to the post office. Then, I split and went down town to the local monthly care-givers support group. Their were only three other participants in this meeting, as well as a different facilitator than the last two times I've been present. There was much discussion about coping, frustrations, support, nursing homes, dying. I found it helpful, only in that the other people there could relate, even the facilitator, who had lost her father the Alzheimer's last year.

I raced home after the meeting, unwound for awhile, then went back next door at five. Dad was leaving at five forty-five for his monthly board meeting at the church, and I was concerned that Mom was taxing him. Well, when I arrived, they were sitting at the dining room table, eating dinner of lobster and shrimp stuffed ravioli. Mom seemed relatively calm to me... Dad informed me that he got the call and that we had been accepted into the hospice service. I believe it was based mostly on the fact that Mom has lost more than ten percent of her body weight within the last six months, plus, well, she has Alzheimer's and they all know it doesn't get better.

Dad was told by Corinne that Doctor N. approved of us doubling the dose of the anti-psychotic drug, Haldol, up to 1 mg. a day from .5 mg. a day. Dad did give her a second dose that afternoon, and she did seem a little less nutty, though still very confused. After he left, I quickly washed up the dishes and Mom settled into the couch for awhile, but she still seemed agitated, so I finished working, turned off the television, and got down to reading aloud to her.

This always seems to soothe her, and soon she was snoring away. After another trip to the bathroom and a little walking about, we settled back into the couch, and I read some more until Debra showed up a little after seven. She had offered to come and stay over night so that Dad could sleep in another bed in the house. A SAINT!

Also, she will be on the team of nurses with our new group of providers. She and our lead nurse, Corinne, discussed the "conflict of interest" (she's a friend of Mom and Dad's), and they agreed that it was okay with them if it was okay with us. Of course, I said, no problem!

We will be offered some equipment, some of the meds will be paid for, and we should receive even more home health help, almost daily, I believe. We were told to buy some stool softener for Mom to assist in her eliminations. I'd like to get a "baby gate" for the basement stairs assembled as soon as possible. Dad told me last night that he took a shower at three in the afternoon, told her where he was, and she was settled on the couch. When he came down, Mom was in their bed, all by herself. Later, he found a blanket down on the bed in the basement, meaning she walked down and up there by herself while he was showering! Can't risk her falling.

So, that's where we stand today. Bittersweet.

Sleepless Nights, Confusing Days

Saturday my sister came up for an overnight, and later my brother stopped by after skiing. My sister went with Mom and Dad to my Aunt's house down the road for dinner. Sis reported back to me later that Mom was very difficult the whole time. Mom's "sundowners" was peaking when my sister arrived at four-thirty, and apparently, it continued on through the whole night. Dad got very little sleep that night as Mom rose from bed several times, wandering around the living room.

Dad got to church and I went next door at about eleven-thirty on Sunday morning to see how it was going. Sis was a bit overwhelmed - Mom was still undressed and sleeping on the couch. We got her up and dressed and fed her an egg and juice and Ensure and a little fruit. Eventually, she ended up back on the couch. Hearing of the bad night before, I decided to stay home from my gig that afternoon so that I could assist Dad, knowing he was exhausted. He was grateful for that. I stayed until about six, then went back over from seven until eight-thirty, after we put her to bed. That night, she stayed in bed and Dad got to catch up on a little sleep.

Monday I went over at one in the afternoon, after I did my down town errands. Mom was okay for a while, dozing in her usual spot, and I read to her from "Little Women" as Dad ran off to do his errands. But then around two in the afternoon, she started up again.. restless, wanting to go home, moving from couch to chair to bed, moaning. She settled down a little when Dad got back around three-thirty, but that didn't last too long, even with a short jaunt outside, up and down the driveway a couple of times. At pill time, she was still agitated, but eventually, she settled back down, and I, somewhat reluctantly, left around four-thirty. I did feel guilty, but I kept my fingers crossed that she wouldn't be too much trouble the rest of the night.

April 11, 2011

April 11, 2011

Naturally, this morning at eight I received an email from Dad saying that she was, once again, up and down all night. He had a tough time getting her to settle into bed.. and once again, lost a lot of sleep.

I'm about to head over there now at eleven and try and keep her up and moving as much as possible so that maybe she'll be more apt to sleep through out the night tonight. I know I'm feeling like pulling my hair out, so I can only imagine how tired and frustrated Dad is.

Hopefully today or tonight we'll get a call from the evaluating nurse for an appointment on Wednesday to see if she'll qualify for long term hospice help. This would, in theory, I hope, provide more assistance. Wednesday night, their friend Debra (the hospice nurse who works for the agency servicing us now) has committed to an overnight (as a friend, "off the clock," God bless her!) so that Dad can get a full night's rest in another bed. We'll see how that works out!

Another Bad Day

So, this was what they call "a bad day" for Mom. When I got over there at nine forty-five in the morning, she was still in bed, and Dad was rushing around trying to get his stuff together for another trip down town for an eye appointment and other errands. He got her out of bed, then I took over from there. Before I joined her in the bathroom, though, I read some notes Dad had wrote down in the notebook, both last night and early this morning.

Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.

After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.

By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.

There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."

The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.

I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.

Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.

And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?

My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.

Hopefully, tomorrow we'll see a brighter eyed Mom.

Tuesday

Yesterday I arrived about nine-thirty in the morning. Dad went off to get some stuff done, and I had a calm morning with Mom. She stayed in her chair most of the time, dozing off and on. We watched a movie and then I did some more reading aloud from the travel essays of Cuba. I made her an egg salad sandwich and she ate three or four bites, plus a few Sun Chips and a couple of carrot bites. Then I fed her a medium sized bowl of butter crunch flavored ice cream. I managed to talk her into going outside on the side porch for five minutes to sit in the early spring sunshine. Dad got home around two in the afternoon, and I took the rest of the day "off."

She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.

Dad I discussed a few more things regarding the future. Not easy stuff to talk about.

Somewhere Outside Of France

Despite our excitement over the prospect of professional help coming to the house with the Hospice agency, as well as Mom bouncing back a little bit from the over-medication incident, let's face it - she's deep into this disease and it's only getting worse.

As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.

After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.

She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.

Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.

And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it  hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.

Mystery Solved

Arriving at the house about eleven-thirty in the morning on Friday, I could see Mom was still in the same state as the day before. As I entered the living room to greet Mom, Dad came up the stairs and was eager to tell me of his phone conversations with the doctor's office and the pharmacy. After investigation, it was discovered that the pharmacy was at fault for giving the wrong dosage of the Haloperidol. I was correct in remembering the amount was .5 milligrams.

She ingested 5 milligrams. Once on Tuesday afternoon after the doctor's appointment, and once on Wednesday afternoon after the ladies luncheon.

Short of fantasizing about getting restitution from the pharmacy (who were very embarrassed and apologetic, and naturally, will replace the drug at no cost..), the important thing is we were right, this time, about the drug having that effect on Mom. It's been decided that we will wait several days for the strong dosage to get out of her system, then start back up again with the correct dosage. Because we noticed a remarkable difference in her manner on this drug.. Moments of the "old Mom" showed through, although she could hardly stand up and walk on her own.

Relieved to have made that discovery, I helped Dad get Mom settled at the dining room table so they could eat some soup. Mom was very weak, so I spoon fed her a little bit to get her started, then she ate a few spoonfuls on her own. After lunch and a bathroom break, she settled back into her chair, and eventually, Dad ran out to the market.

While Dad was away, I read a short story out of The New Yorker to her ("Axis" by Alice Munro), and she enjoyed that. Then I turned the television on real low, and helped her settle into the couch. She drifted in and out of sleep. I worked on a crossword puzzle.

The phone rang once. Dad had a question about the grocery list. Mom smiled at the misunderstanding. Later, the phone rang a second time. This time it was Dad informing me that he had just had a fender bender, he was okay, but would be a little bit longer filling out the paper work.

Great, I thought. Just what we need, more stress. But, Mom was either asleep during the phone call or too tired to care, because she never asked me what Dad wanted, so I didn't bother telling her. He was able to drive home in the Suburu, with the whole front of the vehicle's bumper jammed in the back seats. When he got back, he was able to call the insurance company. Mom was still in the dark about the car. Good, no need to worry her any more.

So, I left to go shopping myself. My brother and a friend came up to visit and play music. My sister is arriving this afternoon for an over night and to stay with Mom on Sunday while Dad is in church. So, more respite, a little fun, problems getting worked out, mysteries getting solved.

Puzzling

Yesterday, Mom had her bath and was game for the ladies luncheon. I offered to go, but we all decided that I could stay home. I jumped on the opportunity of having their house empty and cleaned for four hours.

They got back around three, and I checked in with them around four. Mom was alert, but calm. It was quite noticeable to me. She was able to respond to my questions about her experiences at lunch well, and though she yawned a bit, she seemed bright eyed and mellow. I was hopeful, and left them alone after about an hour.

This afternoon, just after lunch, I stopped in to pick up recyclables to bring to the transfer station. When I walked in, Mom was in the chair, partially slumped over. Dad came up and said she had been like that all morning. When I looked at her, it was remarkable how different her face appeared from yesterday. Her eyes seemed dull and her affect was flat. She told me she slept poorly, that she had vivid dream activity all night and also that her body felt "achy." "Like a fever achy?" I asked. "No." She replied. Hmm.

I ran out to drop off the trash, then went back over around one-thirty in the afternoon. She was in her chair, slumped and sleepy. The television had been on all morning. Dad said she ate very little of her soup for lunch, but ate up her egg and a whole bottle of Ensure for breakfast. Before Dad went downstairs to take a nap, he and I discussed whether or not he should call the doctor. When he came back up around three in the afternoon, it was coming up to the time she was supposed to ingest the new pill, but we opted out. She just seemed way too sleepy and dull. Though, again, when I looked her the eye, she did smile and "see" me... I don't know.

I got her up for a bathroom break and some short walking. We went downstairs when the phone rang and Dad was talking.....she wanted to know who it was. When he hung up, he told us that it was the woman who runs our local Alzheimer's support group, informing him of the care givers training sessions starting up in early March. Six weeks, two hours, four-thirty to six-thirty, once a week. Not a very convenient time.. We are still considering it. If we both go, we'd have to find somebody to sit with Mom for three or more hours once a week at night.  Gulp.

When I left at four, she admitted she was super tired. Yet, she did speak quite coherently when questioned, and she did not act strange.. except for her extreme tiredness. Puzzling.

Is it the new anti-psychotic drug? Or is it that she's just burnt from three days in a row of going out? Or is it that she's tired from a bad night's sleep? Or is it just the Alzheimer's Disease pushing down on her?

We'll see how she is tomorrow, then take it from there. Probably not good to take her off the prescribed drug, but it just didn't seem necessary today. If need be, Dad will get in touch with Dr. N.'s assistant tomorrow. He's supposed to check in with her about Mom's reactions to the new drug on Tuesday anyway.

Hitting Close To Home

I have an extra hour this morning. The choir director at Dad's church is on vacation this week, so they are not rehearsing. Dad will just go in for the service, and I can go over a little later. Of course, he offered to take her to the service with him, but she said something about not being able to get up to "dress code." In other words, she looks pretty crappy, compared to usual. It's hard enough to get her to bathe once a week with our helper, Maria. Towards the end of the week, her hair and clothes get pretty messy. So, she'll stay home, but a couple of the lady's from church are coming over a few hours after church to hang with her, and that should be nice.

This is going to be a tough week. Monday (with some snow coming), Dad and Mom have teeth cleaning appointments at the dentist. Dad has called ahead to let them know of her condition, and they said it would be okay if Dad sat with Mom while she gets her teeth cleaned. I will come along, too, and sit with Mom in the waiting room while Dad gets his teeth cleaned. That should be interesting. We may bring along the mild sedatives in case she gets too wound up.

Then, Tuesday morning, she has her appointment follow up with Dr. N., her primary care physician. I'll go along with them for that, as well.

Wednesday morning, Maria comes for bath day, and then Mom has been invited to a lady's luncheon with the gals from church. She has said she would attend, but who knows, by then, she may be too exhausted and refuse to go. Actually, she's exhausted all the time, even though all she does is rest. She's tired because of her brain.

We finished reading "Sons And Lovers." The end was sad when the mother died. It dragged out for pages and pages, and when I was finishing up that chapter, and we were heading into "sundowners" time, Mom was getting really agitated and upset. But the next day we finished the book, and it was actually me that was tearing up while I read aloud the burial of the mother. Hitting damn close to home, there. Mom stopped me and said, "Are you crying?" And I said, "Yes, so sad. The mother has been an important character in the whole story, it's sad to see her go." "Yes," she replied, and then I quickly read on and finished the book.

I took all of Friday off, as we had to put our old cat to sleep that day. It came up quickly and as a surprise, with two vet hospital visits, the second visit to have him euthanized. I was pretty teary-eyed and sad and tired from all that, so I thought it best Mom didn't see me like that. She was very sweet on Friday night and called to offer to have she and Dad take us out to dinner that night. That's the kind of thing she would have done in earlier times, my partner noted. Of course, we declined, thanking her for being so sweet. Honestly, we were too emotionally drained, and going out to dinner with Mom would have been even more tiring!

Yesterday afternoon, as her "sundowners" kicked in, she once again made a comment about feeling like it was "time to go home, to Mom and Daddy's house." Dad calmly replied, "No, Kate is going home to her house and we are staying here in our house." Then Mom said, "Oh, it must be the disease." She goes in and out of the two realities.. the one we know, and the one that the Alzheimer's presents to her.

A girl friend of mine just lost her mother on Friday to this disease. She was with her right up to the end, and she is full of love and humbled by her mother's strength. Her mother's death hits close to home for me, too. I am constantly reminded of how lucky I am to have these moments with my mother and my father, the good and the bad.

Respite And Gratitude

It's been a fairly quite week with Mom. The cold and snow has kept us all in, with short trips in and out for supplies or events for Dad and me in between our times with Mom.

The re-introduction of the Namenda drug seems to have helped bring her back to a little bit of a more calm state, though she is still panting during movement and sleeping most of the time. I can't wait until warmer weather so we can start getting her back outside for little walks.. I do worry that she's sitting and laying down too much. Her eating is still finicky and light, but at least she eats dinner fairly well, from what I hear from Dad.

One of the biggest gifts Dad and I have gotten the last few days is some respite. Friday night, the twenty-eighth of January, I had a big and important gig to perform in, and Dad wanted to attend the ninth anniversary of the open mic held at the basement of his church. One of the women at the church offered to come over to their house at six o'clock on that night to sit with Mom for a few hours. Mom was not too happy about the thought of it, but from what I was told, once the woman got there, she had a nice time.

Then on Sunday, my younger brother and my sister-in-law, two very very busy people who live almost three hours away, drove all the way up here and arrived at Mom and Dad's on Sunday morning at ten forty-five in the morning! I was practically in tears at their effort! I was able to leave early and have plenty of morning time to get ready for my gig, and Dad was able to linger after church and do some errands in the early afternoon. My brother and his wife left sometime around four in the afternoon.. unbelievable! So wonderful. This is the kind of team work that makes such a big difference in caring for a person with Alzheimer's Disease.

I am about halfway through reading aloud "Sons And Lovers," and though Mom still has to stop me to ask for clarification on characters and events at times, we are plugging through the story and both enjoying the dense, yet beautiful, writing. She still stops to correct me when I pronounce a word wrong.

I continue to have warm, empathetic support from friends. I was introduced to an old friend of a good friend of mine at the big gig the other night, and when I shared with him this life stage I am going through with my parents, his comments were so uplifting and soul soothing. To paraphrase;

"Enjoy these moments. Yes, she will die, so what? That doesn't take away her spirit in you, the memories you have of her. She will never go away in your heart..."

I whole heartedly agree.

Thank you to my family and friends for your help and understanding. It is reassuring and uplifting and it eases so much of the sad emotional burden that could so easily weigh me down. I am quite sure Dad would concur.

Sucky Sunday

Sunday morning I arrived a little before ten. Mom had been alone for about forty-five minutes, but she seemed okay with sitting in her chair with a TCM black and white comedy on. I said hello and quickly did some light housekeeping.. Watered the two plants, swept up the tiles, took the Christmas centerpiece apart and made a smaller one out of the pine cones, and did the few breakfast dishes. After about half an hour of that, I settled down and continued reading aloud from the "Sister Anna" book.

Towards eleven-thirty, I took a break. Having decided to give up on making a big ordeal out of a lunch for her, I just peeled and cut up an apple and she nibbled on that. She always claims she's not hungry anyway. I had brought over a batch of chicken and vegetable and noodle soup I had made the night before, so I hoped she and Dad could eat that when he got home.

He finally rang at just a little before one, to tell us he was just heading into the next town but had to stop at a couple of places. Since I had stopped reading, Mom started to get anxious. She began expressing her frustration and anger towards Dad... for what, I'm not sure, but something to do with being angry with him for "not coming home when he says he will."

Reasoning with her doesn't help. He said he would be home in half an hour, so I stalled for another fifteen minutes then asked her if she'd be alright if I left. I always have to race to get ready for my afternoon job.. She said she'd be okay, so I put on my coat and was slowly starting to leave when I heard her moan from the couch.

"What is it, Mom?"

"I'm shaking like a leaf."

I stayed. She started crying, moaning in a wail. I tried to soothe her, I asked her to get up, we walked around a little bit. She said "she didn't know what to do." In the kitchen, she started to put away the small amount of breakfast dishes. I helped her by showing her where the things went, speaking softly. She went to her bed, I helped her in. She had a scowl on her face, a look of worry.

She got back up again, retired back to the couch. She did not want the television on. I stood by the sunny  door and watched the driveway. I began to get annoyed with Dad myself, thinking why couldn't he plan to just come straight home from church and plan ahead so he doesn't have to stop on the way home? We both have to compromise on Sunday. He's giving up a lot on the social end of church, I'm giving up my Sunday mornings when I can practice, think about my music, help load gear.

Mom got up to use the bathroom again, it was almost one thirty. Finally, he drove in. On my way out, I asked him why he couldn't plan ahead and not stop on the way home? He snapped at me, said we'd have to find somebody else to stay with her. This upset me, feeling accused of not wanting to be there. It's just I have a commitment, too. I've even stayed home from my gig before.

So, I left upset. I left Mom and Dad upset. My afternoon sucked and now I'm going to head over there shortly so he can go do some work at the church.

Day To Day

Still not really out of my Mom funky depression, so I haven't had the heart to write here the last few days.

When I started, I was strong, determined, confident. These last few days, I am feeling hopeless and depressed, wishing "it" would just go away and stop dragging me down. Nothing very dramatic has happened, it's just the day to day grind, seeing Mom so beaten down by the disease. I don't know how Dad does it, he's simply amazing.

We haven't noted too much difference with the drop in the Namenda drug yet, but it is still early in the experiment. She's still nervous, shaking and panting, as well as nodding off a lot. All she wants me to do is read aloud to her. So far I've read to her "The Secret Garden," by Frances Hodgson Burnett; "An Afternoon Walk," by Dorothy Eden; "The Vines Of Yarrabee," also by Dorothy Eden; and now she has started a historical book called "A Maine Hamlet," by Lura Beam. All of these books include a lot of descriptions of flowers and landscape, clothing and foods. Two of them were set in the early 1900's, and the latest book is about life in Maine in the 1800's.

I'll read a chapter aloud to her, and then she'll lift her nodded head and open her closed eyes and stare at me, like a doggie asking for another dog treat. It seems to be the only thing she can concentrate on. My voice lulls her into a world that is the next best thing to the escape of sleep.

Yesterday, I mostly read to her. On a break, I managed to convince her to let me trim and file her fingernails, but she was anxious and bratty the whole time. Though "bratty" is really an unfair word, it's just the closest thing I can come up with to describe the behavior that the Alzheimer's brings out in her. It can be hard to separate the acting out; sometimes I think it's Mom - her real personality, being a brat - but then I have to remind myself that it's not her, it's the brain damage.

We may be getting closer to needing more help soon. I am not sure how Dad is feeling - we hardly get a chance to have a decent conversation without Mom listening and getting upset. You'd think that it would be easy for us to talk, but it's not. Either one of us has to be in her presence all of the time. I'm happy he at least gets the chance to still get out to church every week, try to live "normally" for a couple of hours. However, if he's anything like me, I know Mom is lurking in the forefront of his mind at all times....

Suckfest.

Maybe I'll feel better after today. I'm heading over soon. When I'll get a chance to vacuum, I'll never know. Can't do it with her there anymore.

Oh, and Dad's birthday is on Wednesday.. We are going to try and get all three of us down to the one o'clock AD support group in town that day, and then Dad wants to attend his church board meeting that night. Plus, Mom has her bath that morning. THAT should be a fun day.

NOT.

Side Effects Of Namenda (Memantine)

What side effects can this medication cause?

Memantine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• extreme tiredness
• dizziness
• confusion
• headache
• sleepiness
• constipation
• vomiting
• pain anywhere in your body, especially your back
• coughing

Some side effects can be serious. The following symptoms are uncommon, but if you experience any of them, call your doctor immediately:

• shortness of breath
• hallucination

I found this brief description of the possible side effects of Namenda, a drug used to lessen the symptoms of Alzheimer's Disease on this web site. This is the U.S. National LIbrary of Medicine National Institutes of Health. 

Based on this list, from what I've observed since Mom has been on this drug, she has exhibited the following symptoms:

• extreme tiredness
• dizziness
• confusion
• sleepiness
• pain anywhere in your body, especially your back
• coughing (not extreme)
• shortness of breath
• hallucination

Okay. So, Dr. N. decided to cut the Namenda out of her treatment. Good call, I hope, for Mom's sake. The down side is, she could begin to experience more cognitive decline. This is disturbing, indeed, but nothing we shouldn't be surprised about. 

Because there is no cure for Alzheimer's Disease.

Today Mom was pretty off. It could have been an after effect of her being at the doctor yesterday, getting examined, leaving the house, stressing out while she and I waited in the car while Dad ran into the market on the way home from the doctor's office - and then this morning, having her weekly bath with Maria. Naturally, Dad, Maria and I discussed some things (with Mom present, of course) and this only aggravated her mood. Dad thought she might be stressed about expecting a planned phone call later in the early afternoon from their very old and dear friends in Holland, but even when I went back over for a visit in the afternoon, all she wanted to do was read her book or be read to by me. As we approached the four o'clock hour, her anxiety really kicked up a notch; pacing, sitting, standing, questioning, expecting, disoriented. 

I am hopeful and scared at the same time about the tapering off of the Namenda drug. All we can do is wait and see. Meanwhile, the doctor did prescribe a mild sedative which we can have on hand in case she has another hallucinatory breakdown which we can not calm her down from by words and caressing and reassurance alone.

Snow storms on the horizon, more appointments for Dad over the next two days scheduled, and a busy weekend for me and my partner. If only it wasn't winter, if only we didn't live so remotely, if only Mom didn't have this hateful disease.

Annual Physical

Dad and I agreed together that it would be beneficial for all parties involved if I were to attend Mom's annual physical with Dr. N., so that's what I did yesterday. Mom was not too anxious about it, however, she did exhibit her usual stress about "getting there on time." Dad and I have grown accustomed to this behavior, and we find ways to stretch the time with little distractions so we are not too early.

We were able to be with Mom the whole time, first with the nurse taking blood pressure and checking weight and height (gained eight pounds, lost a couple of inches in height) and such, and then the examination with Dr. N., who is fantastic with bed side manner, I've observed the two times I've met him (the first time was when Dad was in the hospital.)

Dr. N. immediately picked up on Mom's anxiety and rapid breathing/panting thing she's been doing for a while now. Dad and I have gotten so used to it now,we don't notice it as much, but Dr. N. really took the time to calm Mom down and spoke gently with her until she was ready for a bit more examinations. He checked out her right hand (not much that can be done, I suppose), and other vitals, but his main concern was her anxiety, and after a little discussion and research, it was decided to try and lessen the dosage of the Namenda. I couldn't be quite sure, but now that he brought it up, it does seem as if the panting thing started after she was on that drug for awhile.

So, we'll see. The dosage drop starts today, in a slow fashion. The downside is, of course, this could weaken her cognitive performance, and we sure would like for her to hold on to that as long as possible!

She is scheduled to go back the doctor in six weeks.

Fighting Off Sadness

I'm not going to lie to you; I am fighting off the weepies this morning, thinking about Mom's suffering.

This is, by far, the saddest thing I've ever had to witness, personally. Watching my beautiful Mom fall deeper and further. It's agony.

And Dad.. what must he be feeling? A huge sense of loss. Depression at losing his so vibrant and alive wife of forty seven years. Anger. Frustration. Physical and mental exhaustion.  It's all there.

I went over there yesterday after the second phone call, confirming what Dad and I were not surprised would happen.. Mom canceling the ladies dinner at the restaurant. He and I were very supportive with her about her decision, and tried our best to let her know it was alright. Mom was calmer once she proclaimed her decision, but she also spent a great deal of the day napping.

And when I went over a second time, late in the afternoon, with the December darkness closing in on her like a blanket, her restless mind controlling her body like a robot.. sit down, stand up, sit down, stand up, walk somewhere, walk back, sit down in the chair, get up, walk to the couch, lie down, get up.. Dad and I acting as anchors in our chairs, gently speaking with her and riding her waves.

Dad brought up in that time that he wanted us to attend an Alzheimer care givers luncheon and discussion being held at the community center in the next town over, next Wednesday at eleven-thirty in the morning. Mom reacted surprisingly positive about the idea, remembering back, I suppose, to the days she tirelessly worked with the Council On Aging. She assumed it would be a holiday party, and Dad and I did not say much to correct that. As long as we can get her to attend with us, for it is open to both care givers and those suffering with AD. If all goes well, she will have her bath in the morning, then we could drive down to the luncheon and discussion. Hopefully, she won't be too tired and refuse to go.

Day time is always a lot better than night time.

We had a light blanket of snow last night, but today the temp is fairly mild and a light haze of sun.

Last night, Dad suggested that he and Mom switch sides of their bed. He's hoping to get better sleep. I am curious to go over and see if that helped.

More than once, Mom has said to me, when obviously distressed or uncomfortable, "I can't help it, it's the symptoms." At least she's acknowledging it, but it still doesn't take away the symptoms and the agony. I told her yesterday we are all empathetic to her suffering, and we can't imagine how awful it must feel. I also told her it is affecting us, too. Then she says she feels guilty. And we reply that it's not her fault.

And around and around we go, spiraling down. Somewhere, in the middle of that spiral, is a thin line of white light, to which we hold on to with all of our strength and will. But it is so slippery, and I hope we won't ever lose our grip.

If you haven't already, look at this tour of the brain with AD. This is what is happening with my Mom, and millions of other people, as well.

Phone Calls And Soup

Today's first phone call was from Mom again, around eleven thirty in the morning.

"Hi, this is Mum. Do you still want to go to that dinner with the ladies with me tonight?"

"As long as you want to go, I will."

"Oh, okay. We have to be there at (what time is it honey?) ('five thirty') five thirty, so we have to leave at (what time?) ('five or ten minutes past five') five or ten minutes past five. Five or ten past five."

A pause. Then, "I'm feeling pretty shaky right now thinking about going."

"It's up to you Mom. If you don't want to go, we won't go. But, if you do, we will. Just try not to think about it right now, it's still many hours away. Just try to relax and enjoy the day."

"Oh, okay."

"We will talk later, and you can decide then."

Dad got on the phone and together, we confirmed that to her.  There is a chance of snow tonight, so this could seal the deal. Snow plus driving at night plus being around a bunch of chatty women = really scary and confusing for Mom.

"No pressure, Mom, no pressure. What ever you want to do."

Yesterday, sunny and not too too cold, went fairly well. Only one "disaster," when I foolishly gave her a pretty full bowl of hot soup on a tray in her chair and, naturally, the minute I turned my back, she spilled a good portion of it on her lap and sweater. She was pretty upset with herself, but somehow, miraculously, I managed to convince her to change her pants and sweater. She blamed herself, I blamed myself, we managed to put it past us.

Earlier, I got her to go out for fifteen to twenty minutes, walking around the melted driveway. She agreed to let me bring down her collection of fir trees to decorate the windows. She even helped arrange them. She was pleased with the look. Slowly, I am decorating the living room area with her Christmas decor.

She received a phone call from one of her oldest, dearest girl friends. She spoke with her for about ten minutes, early in the conversation telling her, "do you know that I have Alzheimers?" Of course, her friend knew, that is why she called, and after Mom got too antsy to talk anymore, I chatted with her for a few minutes, too. Later that night, I felt sad, thinking that that could be the last time they speak.

Later, Mom's sister called, and Mom spoke with her a bit longer, confirming their dinner engagement at her house this Saturday night. Though, who knows with the weather, it may have to get cancelled.

After lunch and the soup spilling fiasco, I read some more to her from the Wharton book. Again, she closed her eyes and lowered her head, resting her chin on a big pillow in her lap, and occasionally, she'd surprise me and blurt out and correct one of my mispronunciations.

Eventually, she wanted me to stop, so we put on HGTV for awhile until Dad got home from his doctor's appointment. I complimented her on a very busy morning, and she agreed with me.

Later, I stopped back over on my way back from grocery shopping, and gave her a little juice box sized plastic sip cup. She said she had just woken up from a nap. Sleeping is the best way to escape her frustration.

She mentioned yesterday that she was embarrassed about how she speaks. Understandable. Maybe I'm getting used to it, but it's not that bad. It's worse when she's upset, but when she is speaking of the deep past, it's not as noticeable.

It's hard for me not to think about her and her moment to moment struggles.

************
Was just about to post this when I got a call from Dad. "Hello?"

"Hi, here's Mom."

"Hi, I'm sorry, but I just can't go tonight. I'm shaking like a leaf thinking about it. I'm sorry, but I just can't go."

"That's okay, Mom. I'll be over in a little while."

"Okay, thank you, and I'm sorry."

"That's okay, Mom. Bye."

"Bye."

Paranoia

Thankfully, Mom was less depressed yesterday (Monday.)

She was in her usual chair with the television on when I got there at about ten thirty in the morning. First, I suggested we take a little walk around the half melted driveway, and we did that for a good twenty minutes, the sun shining and no breeze to speak of.

After Dad went out to run his errands, I asked her again if she would like me to read to her. I had asked her on Sunday, but she refused. Yesterday, however, she agreed to it, so I shut off the television, she slumped down in the chair with her eyes closed, and I took up part way through the Edith Wharton book she had given up on weeks ago.

The writing in the book is filled with fancy words and long sentences and many parenthesis and asides, but eventually, I got into a nice rhythm with my reading aloud, and occasionally Mom would blurt out the correct pronunciation or stop me to ask for a clarification on who was who. This was one of the calmest I have seen her in a while.. she closed her eyes (and even said to me, "excuse me for closing my eyes," and I replied that that was quite alright with me) and seemed to follow the stories. We even had a laugh or two, but she did say that it hurts her to laugh.

Dad returned home with a few things from the store, and I helped them prepare lunch. I went back home for a couple of hours, thinking I could get some things done for myself, but in reality, too spent to do much but laze about on the internet. Monday's are always a sleepy day for me.

Around two thirty in the afternoon, I went back over so Dad could take a walk. Mom asked if I could read to her some more (yeah!), so after I prepared a small pot of tea and gave her half a cookie, we settled in for some more reading aloud. She was once again enjoying herself when the phone rang, and I got up to answer it.

She overheard me take the message and the woman's name. I wasn't sure who it was, but Mom was convinced it was somebody calling about "Mom sitting," a very touchy subject at this point. Earlier in the day, Dad had spoken on the phone with a woman he was referred to by our neighbor who could possibly do some respite for Dad and me, and Mom overheard this and became very upset by the whole thing, yelling angrily and no doubt, howling.

After I took the message from the woman, I tried my best to distract her from the call, but she was clearly agitated again. I went back to reading for another twenty minutes or so until Dad came home. We told him that the woman called and would be calling back, and he said that she was a woman from an expensive respite house in a fancy town an hour away from here... Mom's sister had slipped a piece of paper with the info on it to Dad at Thanksgiving, so he followed up on it, only to recognize that it was not the right place for them.

However, this did not stop the woman from pushing for another "sale," and Dad, being polite, took her second phone call and went down stairs to speak with her. I wanted Mom to stay upstairs, but she insisted that she go down to listen in. Paranoia is at it's peak here. I walked down with her and asked her to be quite so Dad could politely tell the woman it wasn't right for them, and I managed to distract her for a few minutes in the downstairs bedroom ("Oh, look how nice and neat and clean your eldest son left the bedroom before he went home!" "Mom, where did you get this dresser, anyway?" "Where did this little mirror come from?" and she'd answer me, however...)

She went back out to where he was speaking on the phone at his desk and yelled out a few nasty things, and eventually he hung up and asked her not to do that... then he told her he needed to do something...

She went back upstairs, distraught, and I made Dad hush for a minute and wait, then we both came up. I gathered Mom in my arms, I had Dad come over and we hugged, the three of us, as I explained to Mom, again, that we are on her side, we are trying to take care of her, we won't do anything to hurt her, we won't do anything that she doesn't want.

Of course, I had to lie a little. We don't know what will happen in the future, and at the rate her mind and body are failing, we just can't say for sure what we will have to do. But at that moment, in the three way hug, and the reassurances from Dad and me, her agony and anxiety were again temporarily eased.

We three sat for a few more minutes, then we made a big salad together for their dinner, and finally I went home to my ever understanding boyfriend and my big glass of merlot.

Later that night, Dad called and asked if I would be willing to escort Mom to a ladies group dinner she was invited to this coming Friday night. The ladies know what's up, and she had a ball having a luncheon with them at one of their homes a few weeks ago.. despite the drive over being a nightmare for Dad. Once she was in the presence of her friends, however, she did have fun.

Naturally, I agreed to do it, as long as Mom would still be up for it by Friday. One can never know. Flexibility...  I over heard Mom speaking in the background as Dad and I made the plans, and she seemed happy that I agreed to go with her.

Sigh. Which leads me to this morning, when I just went over to pick up their trash and recycling to make a dump run. Dad was in the basement at his computer, Mom was on the couch looking at a New Yorker magazine. This morning, we all lost power on our road for about two hours... Luckily, they had already had coffee and breakfast when it went off, and perhaps this was why Mom was still "reading" even though the electricity was back on.

She seems bound by worry today. It's Tuesday, and it's been six days since she's bathed. She refuses to change her clothes all week, and she dreads bath day with "Marena" (Maria), but she did admit that she does feel better after her bath and fresh clothes. She looks so frail, her hair is disheveled and needs to be trimmed and washed, she smells. And I can't do anything about it.  She won't let me.

I am heading back over there shortly. I am going to try and read to her some more. Every word I write, every word I read, gets us closer to the end of this god awful, sad, sad story.

Random Worries For Today

I look back at photos of Mom from only 6 months ago, and the change from today is so dramatic. It's so hard to believe how much this disease has snowballed. Though we may level off again for awhile.. who knows. There is no set timetable, they say.

So much to worry about on a regular basis. And not just about her health and safety, but his, as well.

I wish I could get her to exercise more. And eat more. And bathe more. She gets so easily upset.. and she and Dad push each others buttons so easily, too, creating friction. Friction they've always had, but for me, I see it different than Dad. I just feel it's so important to keep her from blowing up. Of course, her spat's don't last too long, but still, it can't be good for her.

At least she sleeps well and often takes little naps.

I worry about Thanksgiving. All the commotion and noise and confusion. She doesn't really want it. Yet, it is important for her to continue to participate and be involved. Once or twice she's said to me, "I can't wait until I get over 'this' so I can get back to work in the garden." Then other times she hangs her head in defeat and says aloud something like she just wants it all to be over.

But these moments pass quickly, too.

Her attention span is very short, so I try to keep her flowing when she wants to be active in movement or speaking. Many times, out of the blue, she'll bring up a memory or individual from the past. The other day she remembered the name of something that we had been talking about the day before.

I saw our neighbor yesterday at voting and she told me she was surprised Mom remembered who she was and her name when Dad took her in to vote earlier that day. AD isn't just about forgetting things, though. It's so much more than that. It can fool most people who are only casual friends.

Mom has trouble getting dressed... buttoning and unbuttoning. Putting on gloves.. her body is caving and stiffening. Her skin is dry.

Oh dear. Well, today she is getting all cleaned up with Maria. She'll feel better after that.